What makes you happy?

Life is what you make it ~ love that saying, but also it can be tricky when life gives you a dodgy hand to play with!

It's fair to say my life has been a combination of wonderful, magical memories ~ a truly fabulous younger life. My primary school years will always be cherished and bring a smile to my lips, it was a different era, one where people were more trusting, forthcoming to help and there was no internet, computers, mobile phones etc. Perhaps I look back through rose tinted glasses but to me it was a magical time of scrumping from fields, climbing trees, making dens in the woods and playing Pooh sticks in the stream. We walked or biked everywhere and spent our days out with our friends burning off energy and getting up to mischief.

My secondary school years are more turbulent. I was sent away to boarding school, which I hated! I met some fabulous people there and it wasn't them I hated but being away from home, the loss of privacy and the rules and lack of freedom! I missed my home, my old friends and being able to just get up and go out when I wanted to. Mum was also diagnosed with Non-Hodgkin's Lymphoma whilst I was there too. I rebelled and did poorly in my O'levels and it took me a full 5 years to get "asked to leave" and never return. So, I was back with my old primary school friends and stomping ground for the sixth form.

The next few years were happier, mum was in remission and I had my freedom again, although perhaps in hindsight I should have knuckled down a wee bit more as I came out with two unclassified certificates at A-levels ~ but then garnered more qualifications afterwards at night school.

Life moved on, I got a job locally and a car. Had a ball partying hard and working hard. Sadly my Nanna, who lived with us, passed away after a battle with cancer which left a huge gap as we were very close. She was a real card, as they say, a funny old fish who made me laugh, I still miss her.

Then I became re-acquainted with The Dave (we have a long history, known each other since I was 4 years old), moved in together, got engaged (which The Dave's mum celebrated with us but sadly passed away before our big day) and then married. Our wedding was brilliant, we remembered The Dave's mum and know she would have approved even though it was not what we would have organised for ourselves, but as we weren't paying for it we let mum take over and do it her way. It was great for us, all we had to do was turn up for fittings and leave her to it ~ mum was in her element and thoroughly enjoyed herself. The day itself was magical, perfect in every way ~ mum had done us proud as had my sister who designed and made our bridesmaid dresses for us too. Seeing mum so happy made us happy in turn, it didn't matter one bit that it wasn't how we would have planned it because it turned out better then we ever could have dreamed whilst mum was surrounded by her friends enjoying the fruits of her labour and her dream wedding.

Then came children, 3 daughters, although again life wasn't plain sailing as it decided to give us 5 miscarriages to deal with too (all boys). The girls are treasured but their early years were blighted by illness and many hospital visits. Mum and Dad were always there to help and support us as by then The Dave was working away to support us.

Eventually we moved to be with The Dave and once we had sadly mums cancer returned, so time was spent commuting backwards and forwards to see her and attend hospital appointments and chemo with her.

The girls seemed to improve health wise and life seemed to be going well. Mum improved and life, for a while seemed great. Mum and Dad watched the girls for us so that we could go to America for The Dave's 40th ~ so off to Nashville we went, visiting so many great places including the Jack Daniels distillery and Gracelands.

Then things started to go downhill again. Mums cancer returned and her health steadily deteriorated until December 2009 when it eventually took her from us. We don't know if that is what caused things to go pear shaped healthwise with the girls or not but the stress was very great for them and mums death left them very traumatised. as we all were.

Then came ME and Daves heart attacks, we have battled many health issues since 2009 that have left is weary and bewildered. BUT it has also made us reassess our lives and decide on what is most important in life and what makes us happy.

If being happy means being a little selfish then do it ~ we spend so much time trying to appease and please others it can sometimes make you lose sight of our own happiness, we push aside what we would prefer to do to accommodate others. Whilst this is commendable and appropriate on some occasions, don't make a habit of doing it.

We are now focusing on ourselves, our daughters and how we approach life and it's trials. I am currently provisionally diagnosed with ME/CFS, I have to return to the GP in a few weeks time after a course of Vitamin D (as my levels were low) for referral to the ME Clinic. We have 2 out of 3 daughters battling ME too and all 5 of us have issues with our mental health (which our therapists have told us is not surprising considering what we have been through in recent years ~ which I won't share with you here, although I share a lot, some things have to remain private).

So, we do what makes us happy - we love tattoos ~ I surprised myself and my family by having my first one on my 41st birthday and have since had 3 more, all of which I LOVE.

I had my nose pierced too, which also makes me very happy, I have no explanation for why it does, it just does.

It depends on what side of the fence you are on ~ some folk may find my tattoos and piercings disgusting (as I know some of my family do). I'm okay with that though because I had them for me, they make me happy and I have reached that point in my life where I can confidently do what feels right for me. It just took me until I reached my 40's because I'm a bit slow like that!

It's the small things that make me happy and belly laugh. The company of my daughters who are incredibly witty and slightly off centre. The Dave who is not only my husband but also my best friend, he makes me laugh every day and understands my oddities, of which there are many. The dogs, our Hairy Trio, they give unconditional love and sense when you need them to come and cuddle you. Our family caravan in Filey, which is right on the beach which means I can sit and watch the sea to my hearts content. It's these things that keep me sane and moving forward. That's why the latest tattoo is so significant for me and relates not only to my own battles but to those of my family too.

So I leave you with this, be a little selfish, cherish yourself, laugh as much as you can, remove the negative people from your life and surround yourself by the ones who nourish you and understand your crazy. Embrace yourself, who you are, what you are and learn to love yourself without apology. If like us you are restricted by physical and mental health issues then do what you can within those boundaries, accept help from others and live in the moment, drink in all those unexpected pleasures, don't conform. You are unique, you are special, you are quite simply you.

Although I am not religious, I don't belong to any church, instead I class myself as spiritual I do embrace the motive behind this faith-based project and support it.

#projectsemicolon  

YOUR STORY ISN'T OVER YET 

Project Semicolon (The Semicolon Project) is a faith-based non-profit movement dedicated to presenting hope and love to those who are struggling with depression, suicide, addiction and self-injury. Project Semicolon exists to encourage, love and inspire.

~ Blessed Be ~

x~X~x

Finally ME

So, finally, after 2 long years of feeling unwell and gradually seeing my health and ability to function decline I have been given a diagnosis. Up until recently all the doctors I saw decided stress was causing my physical symptoms due to psychological  strain. I was sent for therapy and put on anti-depressants which made no difference to my physical and cognitive issues. My therapist pronounced me sane (bless her, not many others would!) and I came off the anti-depressants, which only helped in making me gain a substantial amount of weight.

The symptoms continued to worsen, the more I tried to push through the more I struggled. It started to dawn on me that perhaps I was suffering from the same illness as 2 of my daughters ~ which to be honest frightened me. Being a carer and being sick yourself is not a great mix!

Finally though, I saw a new GP at our surgery ~ she saw me through fresh eyes and listened intently to my catalogue of symptoms, treatments and worries. She trawled through my medical history whilst I was with her and noted my numerous visits all saying the same thing and wondered why nothing had been done sooner for me. I felt a huge surge of gratitude towards this wonderful doctor, who not only listened but actually heard what I was saying and understood my concerns. This is not to slate my previous GP's, who are all lovely ~ but read our family catalogue of dramas and understandably decided stress was the reason for me being unwell ~ our lives our never dull, there will always be the odd trip to A&E or mental health issue to address among many other mini dramas that occur in our lives but I knew this was more and at one point thought I was going insane or imagining it all.

However, The Dave and my girls saw what was going on and made me realise I should keep pushing for further investigation as to why I felt so unwell and exhausted. Walking for miles with my headphones in, which I adore, has become a distant memory. Now I have to get taxi's when once I would walk home. I find myself napping during the day but no matter how much I sleep I am still exhausted. Pains in my joints and muscles make me squirm trying to find a comfortable position. Headaches, sore eyes, swollen tender lymph glands, sore throats, light sensitivity ~ this and so much more are now part of my life. My eldest daughter, Keisha, comes over to help me with housework and ironing because I can no longer keep on top of it. Basically, it sucks!

SO, this wonderful GP sent me for pages of test (literally sheets of A4) to ensure everything had been covered. Everything has come back as normal with the exception of me being low on the old vitamin D. As she was filling in the referral form for the ME Clinic with me she noticed that being low in Vitamin D meant that I couldn't be referred UNTIL I had been on vitamin D supplements for minimum 3 months, as apparently they could "make me better". So form half filled in she gave it to me for safe keeping and told me to come back after three months of taking the supplements to see her. I have spent every available moment in the sun for as long as I can tolerate (my thermostat is broken, so I am either too hot or too cold, never "Just right") ~ I have  also had 3000iu of Vitamin D under the tongue daily to, but unfortunately this wasn't a magical cure,

I am still unable to function the way I would like and my life is a series of compromises right now. So, back to the GP I went and this time the form is completed and has been sent off ~ I now have to wait, who knows how long, for my appointment to come through to see the team at the ME clinic at my local hospital. I know all about the nature of ME having cared for my daughters who suffer from it for the past 6 years. However, I am hoping that being a carer with ME may mean that the clinic can offer me support which I may not otherwise be able to tap into.

It's not the worst news I could have had, it's not the best either, I suppose it's all relative but at least I know the nature of this beast and so do my family ~ with 3 out of 5 of us suffering from it!

It's been a long 2 year slog, knowing I wasn't right to getting to this point. Ironically it's a relief to have a diagnosis. Now it's a case of working with what we have and doing the best we can to manage our lives and make the best of every moment. I will embrace the good days and make them count and not berate myself for the days when I am literally welded to the sofa and cannot move.

We need research into this illness, why are there so many families who have multiple members sick with it? Is it genetic or infectious? What triggers it? How can it be diagnosed sooner so sufferers can get support and help? What treatments can be found to help improve symptoms and help sufferers make the most of their lives? These are only a few questions but this is why I support Invest in ME, to explain what they do I will quote from their website

Invest in ME

"Invest in ME (IiME) was set up with the objectives of making a change in how ME is perceived and treated in the media, by health departments and by healthcare professionals. We aim to do this by identifying the three key areas to concentrate our efforts on - funding for biomedical research, education and lobbying. Invest in ME aims to collaborate and coordinate events and activities in these areas in order to provide the focus and funding to allow biomedical research to be carried out.

Our aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness

We believe that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for bio-medical research in to ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.

We believe governments should standardise on usage of the Canadian Criteria for diagnosis so that there is an agreed basis (noting that evolutionary improvement would be welcomed).

We believe governments need to not only endorse and adopt, but officially promote  the World Health Organisation classification of ME as a neurological illness, as defined by ICD-10-G93.3, separate from the psychological illnesses classified under ICD-10-F48, in order to provide the distinction of the neurological disease.

We believe that governments should provide a national strategy of biomedical research into ME to produce treatments and cures for this illness.

Our efforts are focused on setting up a UK Centre of Excellence which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).

Invest in ME have no paid staff - all work is performed for free by volunteers.

I am moving forward knowing the monster I am dealing with and won't let him hold me back from doing things with my family, it'll just take more organisation, planning and compromise is all.

Since my M.E. diagnosis I have also been diagnosed as having Fibromyalgia and Hypermobility Ehlers~Danlos Syndrome. With help of rheumatology physiotherapists I have a bespoke daily regime and know the beasts I am fighting.

Knowledge is Power.

~ Blessed Be ~

x~X~x

Misunderstood

Misunderstood = To fail to interpret or understand (something) correctly.

I have two daughters who suffer from Myalgic Encephalomyelitis (M.E.), defined as being "A complex illness adversely affecting multiple systems including the brain, heart, immune, neuroendocrine and circulatory systems."

This is a hugely misunderstood illness, not just by a huge swathe of the general public but also by so many health care professionals who have been drawn in by the psychiatrists telling them that it is purely a Somatization disorder - i.e. psychologically based producing physical symptoms. 

This is not true, I quote this paragraph from Invest in M.E. (a respected charity who support sufferers, raise awareness within the medical community and invest in biomedical research projects into cause and treatments for the illness).

"Definition Problems M.E. in the UK has suffered from the lack of adoption of a clear clinical diagnostic tool, resulting in M.E. sufferers not being identified correctly. Instead M.E. has been confused with other conditions that cause chronic fatigue. This obfuscation has lead to the psychiatric lobby being able to diagnose M.E. sufferers with "somatoform" disorders, such as "Faulty Illness Belief"

Prior to their diagnosis I admit to being mostly ignorant about the illness. 

I had heard all the references to it being something called "Yuppie Flu" and meant sufferers had very little energy ~ that is where my knowledge ended. 

Having seen my daughters suffer and how massively it has altered the course of their lives I now know how fully ignorant I was. My fear is that, unless you live with it, or care for someone who suffers from it, the general population continue to live in ignorance about this serious illness and are blasé and unsupportive in their behaviour towards sufferers.

So the large number of sufferers living with this life altering illness are left sadly very misunderstood by the majority. This is something I have vowed to work towards changing, by talking to the people who know us about the illness and joining force with charities working towards raising awareness about it and also money towards the funding of biomedical research to try and find out what causes it and treatments to help combat the symptoms and help those who suffer to reclaim their lives.

There are people who will say "Oh why is she banging on about this again" and read no further, sadly I can't do anything about that. BUT there are so many lovely people I have spoken to who have been surprised to hear about how M.E. can affect a person so severely and have asked questions, shown an interest and left me with the promise to help me spread the word ~ M.E. is not a psychological illness, it is not a case of "just being tired" but so much more than that.

Why am I writing about this now?

Tasha is having a huge battle with M.E. and the symptoms it is throwing at her causing her to spend almost all of her time in bed, struggling to even send a text message (and so enlists my help to send it for her), is in pain, has digestive issues, can't think clearly (brain fog) and can barely keep her eyes open for any length of time. 

Her mental health is in decline too because she worries that the people she cares about, the few treasured friends she has remaining may think badly of her. This is because due to this illness she can't keep prearranged arrangements to see them or keep in touch as she goes for long periods of time without any contact. She worries they will think she is just being lazy and rude and will lose patience with her and become bored of supporting her because her illness goes on without her seemingly getting any better.

Recent articles in the press such as... "ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers" which, was in the Telegraph, among others of a similar vein also printed in different publications, haven't helped her with her anxiety about how others may think of not just her but others suffering from M.E.

Every time I see M.E. articles in the press my heart sinks as it is usually all about how psychiatric treatments such as Cognitive behavioural therapy (CBT) can help patients recover and get back on with their lives. Usually this advice is combined with the idea that Graded exercise therapy (GET) alongside CBT will be the absolute cure.

I read these articles with a sinking heart and know that there are certain people who will use this (false) information against sufferers, telling them that they just have to work at telling themselves they aren't sick and put on a pair of trainers and get on the treadmill and hey presto, they will be cured!

I am hugely against the idea of GET because in the beginning, when we were very new to living with M.E. we decided we would do everything we were advised and do whatever it takes to get the girls better. So we agreed to try it with our youngest, Tara, who became sick first.

We were told to get her to walk to the first lamp post in our street as fast as she could and back again twice a day, no matter how tired or unwell she felt. Each day we had to add a lamp post and keep the speed up. By the end of just one week she was in a huge amount of pain, exhausted, waxy coloured, nauseous and just very unwell.

So we discontinued hoping she would pick up ~ she didn't. We ended up in a pain clinic and on amitriptyline then referred on to an osteopath who helped relieve the pain and carry out lymph drainage massage (which she taught us to do to continue at home).

The combination of medication and osteopath helped enormously with the pain, but the damage by the GET lingered and 5 years on she is still mostly housebound, attending school via a virtual school using her laptop in her bedroom. Social activity with her peers has to be carefully planned with the knowledge that bed rest will be necessary for a few days afterwards. Tasha is more severe than Tara, she gets intermittent paralysis of her legs, burning sensation of her skin as if it is on fire and extreme fatigue, meaning some days she has to shuffle to the toilet on her bottom because her legs have no strength in them to carry her and allow her to walk.

Both girls have a Blue Badge which we find invaluable and wheel chairs if we need to go more than a short distance. 

However, I am not advocating that they don't do anything at all either because it's important to keep the joints and muscles moving in whatever way you can. Whether that is via relaxed passive movements for those severely affected and unable to exercise themselves, to gentle stretches, pottering intermittently around the house, walking, swimming, gentle sensible exercise etc - whatever you are able to safely and comfortably do without causing Post-exertional malaise (PEM) "is one symptom of chronic fatigue syndrome (CFS), but is itself more complex than a single symptom. Patients experience fatigue, pain, cognitive difficulties, sore throat, and/or swollen lymph nodes after previously tolerated physical or mental activity.

These symptoms may appear immediately after the activity or after a period of delay, and may last days or weeks." What you are capable of doing depends on the severity of your M.E.  When the girls are able to they walk for short distances either with or without the crutches we have for these occasions with the back-up of a wheelchair should they need it. They do gentle stretches and try to keep their muscles moving and we very carefully monitor them, as they do themselves and pull back when they feel it is too much for their body to cope with. They are not lazy girls, before they became sick they were both hugely physically active, Tasha with sport and Tara with dance. They were devastated when they had to give these activities up and so when M.E. sufferers are called lazy it is like waving a red rag at a raging bull and I get onto my soap box and rant angrily on at anyone who cares to listen!

It is only by talking about it and challenging old out~dated beliefs that we can change public perception, gain support to raise funds for research into treatments for the illness along with tolerance towards those who suffer, giving them the much needed support and understanding they require.

Remember, the first step towards helping someone with an invisible illness is to tell them you believe them and move forward from that. For a sufferer to know they are believed and more importantly supported matters far more than you could ever know.

~ Blessed Be ~

x~X~x

Hatching Plans

Oooh isn't it a great feeling to hatch plans for a better future?

This week has been a very eventful one for us all round - in a sort of negative events resulting in positive planning process kind of a way.

Tasha is mentally and physically at rock bottom.  This is making everything she does very difficult and seeing the light at the end of the tunnel something she struggles to believe in.  We are adamant that we can turn this all around.

We realise that Tasha has very low energy resources and that we have to plan everything she does carefully into her OT pacing schedule to ensure that she doesn't drop down physically any further than she is already. So for this week coming all she has to do is;

a) get up and dressed before midday everyday
b) come downstairs for an hour every day round about late afternoon.
We also spoke via the phone to her psychiatrist about her sleep issues - she can fall asleep but is unable to stay that way and wakes up repeatedly throughout the night which is resulting in her becoming more exhausted day on day.  This in turn is impacting massively on her physical health and energy levels we also wonder if it is a contributing factor in her awfully low mood.  The suggested treatment for both of these is that the psychiatrist would like Tasha to consider switching from her prozac to mirtazapine (like me) as it has a sedative effect and so will help with her sleep.  The appointment to discuss this and get the necessary script will be on Monday morning - so not too long to wait at all.  Meanwhile we are still waiting for the CBT referral to provide a therapist but due to budget cuts and the number of therapists available we know this won't come through for her for several months yet.

Tara,has been very low in mood recently because her ME crash seems to be taking an age to recover from and she is also really fretting about her education and how impossible it seems for her to gain her Maths and English GCSE's going via the route we are currently on. To be honest, we hadn't fully appreciated how greatly this was affecting her and the stress of the worry, we feel, has been a huge contributor to her current crash and so we need to seriously address this.  We have also had word that the OT referral has gone through - our first appointment with her will be on 14th April and this will be to focus on pacing and finding ways in which to plan education into her recovery too.  The CBT referral, like Tasha, may well take some time to come through - so for both girls learning to try and control their anxiety and panic is tricky in the meantime.

Both myself and The Dave filled in our forms for therapy via our GP and we have appointments for 2pm this coming Monday - The Dave for CBT and myself for counselling sessions.  So everything does indeed seem to be falling into place *crosses fingers, eyes, toes, legs and hopes not to have tempted fate*.

So, hatching plans, I hear you ask (or do I?) - yes that is precisely what we are doing.

After chatting with the girls, Tasha and Tara both have very set ideas of what they would like to do with their futures.  Tasha wants do follow a photography course and Tara a media course - both held at the local College. The requirements for them to attend are to pass the Colleges interview and also to assess their work (so Tasha needs to build up a photographic and Tara a film portfolio to show them) AND to have both Maths and English GCSE's.

Now - due to their ME, accessing mainstream education has been impossible, they just don't have the energy to withstand going and attending these venues even on a reduced timetable.  This is mostly due to the many various stimuli that there are in these places, with the noise and crowds which are not only overwhelming when sensitive to sense over stimulation but also trigger their anxiety and panic - which drain their batteries very quickly.

SO - the clock is ticking and we are not gaining any ground even going via the hospital tuition at home/in the ward.  What do we do, where do we go from here?

Well, what we have done is sit with our heads together, with our calculators and finances and try and work out a cunning plan that will enable the girls to gain these precious Maths and English GCSE's and what did we come up wtih..... *insert drum roll and builds up the tension* NISAI Virtual Academy!

Yep, that is where we are now - we have spoken to the folk (who are incredibly helpful) about this and we are enrolling both girls to take the English iGCSE course, which is only a year in duration and then JUST Tasha to take the Maths GCSE course BUT for Tara attend the virtual lessons with her (as it is a two year course and follows along with Tara's peers in mainstream school).  Now it is NOT cheap by any means (which is why only Tasha is doing the virtual Maths course, as Tara will take the actual exam via the mainstream school), but after watching a virtual lesson and seeing how it works we are sold on it.

Plus Jane Colby (an ex- headteacher herself) of  TYMES Trust backs it wholeheartedly as a means of children with ME gaining qualifications. However, the reason we are not enrolling Tara to take the virtual Nisai course exam is because we are NOT removing her from the school roll at the secondary school she is registered with.  This is because, to save on costs, we want her to sit the actual exam in the school (so paid by them) but for her to take it in a classroom on her own, as Keisha did.  We are also hoping that by Year 11 Tara will be strong enough to attend the odd Maths lesson there amongst her peers (although still following the course via the Nisai virtual school alongside Tasha) and by staying on roll it will also enable her to join in with her friends at the school prom/photograph day too.

So - that is our cunning plan.

We will start the courses in September, so Tara will continue with her Medical tuition until then and both girls will be going through their work as and when their ME enables them so that they are ready and at the right place to start their courses.

The beauty of the Nisai approach is that the girls can sit on their laptops to attend their classes in their pj's and in bed if necessary with no make-up on or having to worry what they look like to others (as there is audio feed to their classmates but not a visual one). All the students choose an icon from a menu to represent themselves instead of a photograph - also the lessons are recorded and so they can save them to watch as many times as they wish (which when you suffer from brain fog is a really BIG plus) and also to revisit for revision purposes too.

So that, is as they say, that from me for this week.

This weekend I shall mostly be trying to snack on healthy foods (as a side effect of my tablets is stimulation of appetite - darn it!) and try NOT to eat chocolate & step away from the Banana Bread! This is because, in the words of the Fast Shows Jesse;

This week I 'ave mostly been eating Banana Bread!

Ho hum, mind you - next week I will no doubt be replacing Banana Bread with Bakewell pudding as I have faithfully promised to make one for Tara on Sunday ('tis a fabulous recipe and you use puff pastry instead of shortcrust - if you are REALLY lucky I may just share the recipe with you next week).

Anyhoo - this blog has been something of a rambling one and so I best cut it short and go and do something productive, whilst avoiding spilling, knocking and breaking things - if I were Worzel Gummidge today I would 'ave me clumsy head on!

Have a fabulous weekend all.

~ Blessed Be ~

 x~X~x

Goodbye Summer, Hello Autumn

Good morning all, is it just me or does it feel as if Summer has waved goodbye and Autumn has stepped forward to take its place?

I've had to resort to wearing jumpers and boots over the past few days and am seriously considering bringing the duvet out of it's slumber and slinging it back on the bed ~ time to pack away summer bed and bring out the winter coverings.

One discovery I have made though is the joy of a soft jersey skirt for the more comely (as we call it in our home) figure ~ I had never dreamt that this item of clothing could afford such comfort, it's quite the revelation, so obviously I bought myself two (one in dark grey, the other in black), I also found a wonderfully comfortable ankle length flared denim skirt too ~ so that brings my new skirt collection up to 3 ~ Tara, my love, what on earth have you started? 

So, although my fondness for wearing jeans, trainers and hoodies is still very much my usual daily attire due to it's practicality when living with 3 dogs, I have decided to occasionally enjoy the freedom of skirt wearing too.  

I must say, it feels really rather odd to wear and I feel strangely self conscious when out and keep expecting someone to stop me and ask me what I think I am doing going out dressed in a skirt which I know is bizarre.

I have also added two more kaftans to my collection, two very soft jersey ones which I love to wear around the house, my husband keeps sniggering at me and asking me when I will be buying the head-wrap to go with them as he feels I am emulating Margo from The Good Life (cheeky).

Yesterday I had my first ever "live" classroom experience via Nisai Virtial Academy for the parental tour and to then fill in the online registration form for Tara. The lady who gave me the tour was lovely, friendly with a great sense of humour, you could hear the smile in her voice which bodes well for Taras new academic journey. 

The virtual classroom is easy to navigate and has two interactive boxes, one where the pupil can privately talk to the teacher to ask any questions without their peers knowing and the other box where the pupil can chat with their peers and teacher alike throughout the lesson.  The microphone is controlled by the tutor who will pass it over to the pupils if they wish to answer a question and speak to the class (they click on an icon to put their hands up) but if they are shy they can opt to type in the box instead of speaking. 

All lessons are recorded and stored for a year for that students to watch over as much as they like and use for revision purposes too. There is also another part of the site where students can hang out and chat together and join clubs. It is entirely safe as the email addresses given to the students to use can only be used within the Nisai Academy and student areas. 

I did have some trouble submitting my registration for Tara though because we are paying privately we have to source our own exam centre, and as Tara has ME we are needing a home invigilator so that she can take her exams at home.  As yet I have no clue how to organise this and the lovely folk at Nisai have assured me that they teach many children with ME who choose this option and they will help me sort this out BUT the registration wouldn't go through which had me pulling my hair out because of this.

However, problem soon solved after I contacted my on-line tour guide who managed to put it through from her end and we will complete that one section at a later date *phew* ~ so Taras headset will be on its way today, we are having our connectivity test on Friday of this week (as we are having new broadband installed on Thursday) and then she will have her induction on Monday 1st September, classes start on Wednesday 3rd September. 

This is enormously exciting as Tara will be "in school" for the first time in almost 5 years and taking two GCSE courses.

On Wednesday, as a final holiday treat, we are taking Tasha and Tara to West Midlands Safari Park as a belated birthday present for them both. Unfortunately earlier this year both girls were unable to fully enjoy their birthdays due to being too unwell and we promised as soon as we could to take them out for the day. Keisha and her boyfriend will stay at home and dog sit for us as they will be packing and preparing for their trip to Leeds Festival on Thursday morning. 

I am very impressed with the Safari Park as I rang up to book tickets and was told to do it all on-line instead to get the 10% discount on all tickets, then we only have to book two more tickets for the girls under the disabled box which then means myself and Dave would get in free as their carers. It's very rare being disabled has perks but this is one of the few and so we booked tickets for both theme park and safari.

My job for today is to buy goodies for a picnic for us to take along with some goodies for Keisha and Jack to have at home.

Then my list of what I have to remember to take with us; blue badges, two wheelchairs, student card, picnic & blankets and most importantly of all ~ camera to take snaps to remember the day. I know the girls are particularly looking forward to seeing the monkeys and so with that in mind we have just taken our roof box off as apparently the monkeys have learnt how to open them and we wouldn't want something like this to happen to us (or any stowaways coming back with us!).

So, here's hoping for some good weather tomorrow and that the rain holds off until later in the afternoon. Have a great week all.

~ Blessed Be ~
x~X~x

It's all relative

I found this lovely analogy on the web...

"We are all humans that are all really after the same thing. However, we all have different points of view, and because of this are divided as to what the "meaning of life" is....it's like if you took a million painters and put them in a circle around a large mountain. While it's true all the painters would be painting the same mountain not all of their paintings would look the same."

Whilst I am horrified and have huge empathy by those affected by the monstrosities being carried out around the world, the violence, suffering, loss of life and devastating illnesses I also feel equal devastation by the suffering of my daughters too. Please don't judge me too harshly for this, I know the girls have a roof over their heads, have health care available (although limited applications to their illness) and we are not in a war zone, however I feel that suffering, no matter where it is, is relative to your situation.

This past week the girls have been particularly unwell, their ME symptoms are at their worst ever since they were diagnosed and both are needing the assistance of wheelchairs to cover any distance. So we decided to go to our caravan on the Yorkshire coast.

First stumbling block was first born daughter who decided she would rather stay behind and house sit to trial living alone for the week, she is hoping to move out early next year providing she can secure a job.

I don't know if it is just me but a small piece of me began to mourn the loss of my first born child as she takes these first steps towards flying the nest and establishing herself as a young adult in the world. I am also enormously proud of her but it seems too soon for me to be letting her go, time has quite literally flown and it hardly seems possible that she is an adult now.

So we agreed she could stay behind and I whizzed around the supermarket to refill the fridge which we had allowed to empty and left some cash for further supplies for later in the week.

We then packed the car for our week away, wheelchairs = check, blue badges = check, dog paraphernalia = check, slankets and other such necessary items = check, and we were off.

I simply love our place on the coast, I may have mentioned that a few times previously, the change of scenery, the smell of the clean fresh air and the view of the sea ~ which makes my heart lurch with excitement as I catch a glimpse of the it as we draw closer to our destination. The girls travelled in their pj's with seats reclined with pillows and slankets to make it less exhausting for them and the dogs had their own special bed in the centre of the car to snuggle down in for the journey.

Once there the girls collapsed on the sofas whilst Dave and I unpacked and the dogs had a run around the decking before we walked them ~ which resulted in us both becoming soaked to the skin as we were caught out in a dramatic flash storm with thunder and lightning and torrential rain. It was quite energising, once back under the cover of the caravan we started to steam in the heat, once we had dried ourselves and the dogs off the storm just stopped and the sun came out (typical).

We had taken games, xbox, videos, art supplies and loom bands with us to occupy the girls. In order to achieve our goal of taking the girls to the beach we had to ensure they rested for a couple of days and watched the weather forecast to select the perfect day ~ which arrived midweek.

We were only out for a couple of hours but in that time we manage to get the girls onto the beach and have a paddle in the sea, along with the dogs who are slowly overcoming their fear of the water ~ this time round they actually went into the shallow waves and paddled a little with me instead of running away from them. 

It was a wonderful couple of hours but the girls found it extremely tiring and so as soon as they had rested on the beach and allowed their feet to dry we bundled them into the car and drove up to the Starbucks on site and bought them a cold drink before heading back to the caravan. That, sadly was all the girls could manage this holiday, the excursion to the beach knocked the energy right out of them and they had to rest for the remaining few days of the holiday.

To be honest, this blog post isn't really going anywhere is it?

I'm really not entirely sure what I am hoping to share with you either but it felt important to recognise the fragility of life and to say grab those precious moments when you can no matter how short they are and put them in your memory bank so that you can pull them out during the dark days and remember that the darkness doesn't last forever, chinks of light will probe and distort the darkness ~ with luck and hope those episodes of light will become longer and brighter until eventually the darkness is banished to the shadows and no longer has the grip on your life it had before.

This is called hope.

~ Blessed Be ~

x~X~x

What if?

What if we had done things differently and taken the other path?

I have been thinking an awful lot recently about the choices myself and Dave have made since having our children.  What if we had done things differently - would they still have become ill with the chronic illnesses they have and suffer from mental health issues? We moved from the countryside to the city and the girls haven't enjoyed the freedom to roam the same as we did as children, due to our fears for their safety & the busy roads and unfamiliar surroundings.  Are we, as a society, far to overprotective of our children now?  I remember having the freedom to go out and be with my friends, without a mobile phone, from morning 'til night.  My parents and my friends parents weren't worried or anxious about where we were ~ why has that changed?

The pressures of modern day life, expectations of how you should measure up and perform, how you look, dress, behave ~ all seem to be under the spotlight far more than I remember when I was younger.  This seems to put huge pressure on our children.  

I wish I could whisk my girls back in time to when I was young and growing up in a small Lincolnshire village, surrounded by trees and fields.  It was a time before laptops, mobile phones, i-pods, sky TV and  x-boxes.  You could walk down the main street and everyone would know your name, your parents and relatives.  You felt as if you belonged, safe, inside a small friendly community. Instead of socialising alone in our rooms via technology as children tend to do now, we arranged to meet up with our friends the night before.  In the morning we'd roll out of bed, throw on our jeans, t-shirt & trainers before climbing onto our bikes for a day of who knew what, we let the day evolve ~ we would only return dishevelled and grass-stained in time for tea, happy and exhausted.  

We swam in the local outdoor pool during the summer, built dens in the woods, rode our bikes on the "ups and downs", scrumped whatever we could from farmers fields (I remember once trying to make potato salad from uncooked potatoes!), paddled in streams, climbed trees and just generally had a fabulous time.  Modern day children don't do these things any more do they?  My girls once inspired by tales of our childhood went to our local park to climb trees only to be told to come down by a policeman walking by because it posed a "Health and Safety" risk, the same with building dens on the fields behind us.  

It seems the old playground games such as British Bulldog have also been banned ~ children are no longer allowed to play rough and tumble in case they hurt themselves.  Isn't that part of life?  You hurt yourself and learn to then pick yourself back up and carry on.  The community feel seems to have dissipated too, villages are expanding, new people move in, old people move out and it's not so easy to know everyone in your local area any more.  Don't get me wrong, change can be good, new technology life saving and makes life so much easier ~ but a large part of me still hankers back for the old quiet friendly village of my youth, with it's old fashioned shops and small community feel. 

I do wonder if my girls are all suffering from their mental health problems because of the way society is now.  Are we all too disengaged from our surroundings and other people around us ~ we find it so much easier to connect via the virtual world. 

All of my girls suffer from anxiety and two from depression, then there is their chronic illnesses to contend with on top of that.  Would their lives have been any different had they been able to live their childhood the way both myself and Dave did?  Has the city living and technology played a part in their mental and physical health issues ~ would they be stronger and healthier had they lived a technology free childhood in the countryside?  I don't know the answers to these questions, but I will always wonder. 

Is it a natural parental trait for you to blame yourself, "what if?" I had done this or that differently? I will always wonder.

All we can do now is try to teach our children to get outside as and when they can, to reconnect with nature, their surroundings, listen to the birds, smell the different scents that come with each season and to enjoy it quite simply for what it is. To believe that they can look, dress and behave how they want to without thoroughly analysing whether or not it would be acceptable with their peers, and whether they would be teased or ridiculed for just wanting to express themselves in their own unique way.  I try to teach them that life is for living your own unique way, to do what you can when you can, how you want to and not to be hindered by wondering how it will come across to others. 

Our choices have been dictated by my girls mental and physical health, their road isn't the same as their friends, they are having to negotiate an unknown path - but although it may be scary and dark in places, together I am sure we will be able to overcome these patches and bring them forward to a place where they can flourish and grow, find their own paths in life and not fear the opinions or ridicule of others. 

So, back to my original question, what if? 

Who knows, perhaps our lives are this way for a reason we don't yet know, perhaps it is to direct us towards a path we would otherwise not have followed.  I would like to believe that this is true and will try not to allow myself during my dark days to blame myself for choices I made on the girls behalf during their formative years. Perhaps fate ensures you find the path it has laid out for you and whatever choices you make it will end up where it wants you to go.

~ Blessed Be ~

x~X~x

Mental Health Awareness Week ~ Our Journey.

Anxiety, Depression, Post Traumatic Stress Disorder, Hallucinations.....did you know, 1 in 4 of us will experience a mental health problem in any year? 

This week is not only ME Awareness Week, Sun 11th - Sat 17th May ~ but also Mental Health Awareness Week which runs from Mon 12th - Sun 18th May.  Sadly as a family we have been blighted by mental health issues and ME, we feel sharing our stories can help lift the stigma and allow people to feel more comfortable and secure about asking for help and letting people know that in truth they aren't okay and would like some support. 

My husband has been taking anti-depressants for some time now and has recently embarked upon a course of CBT to help him find coping strategies for our unique home situation, our problems can't be resolved as they are caused by chronic illness and so we require assistance to help us deal with them instead.  I have only recently been on the antidepressants as I fought against the advice to take them for a long time, I am ashamed to admit, because I gain weight on the tablets available to me (I react to a number of the medications and so have very little choice of medication open to me).  Since taking them I have found some relief from the dark pit of despair I had fallen into but have also had to accept the weight gain that has come with taking them.  I have the support of a fabulous therapist who I see to vent and talk about our situation, it is my safe place to express myself and get support and advice.

I also have three daughters, one with ME, anxiety & depression, another with ME and anxiety and my third with Autism, ADHD and Dyspraxia.  Although my husband and I have our demons, as adults we can share and express our thoughts to each other but it is far harder to see your children affected, as it accentuates their vulnerability.

Two of the three girls hear voices.  One daughter has had increasingly worsening issues and difficulties these past weeks and became so ill we had to go for an emergency appointment with our psychiatrist.  Her medication was changed over 6 weeks ago and hadn't suited her and we found just wasn't working.  

We had noticed that her mood had been dropping lower and lower since switching and she had hit rock bottom and reached crisis point.  On top of that she has also been experiencing visual hallucinations and more worryingly auditory hallucinations, which in her case presented as old men talking outside of her head, sometimes a whole crowd of chattering voices, speaking not quite clearly enough to hear what they were talking about, just a whisper away from getting what is being said and then it's gone and reverts to mumbling voices.  These happen mostly whenever she's quiet or alone, day or night and on a daily basis.  

The doctor has reassured us that she feels it is nothing sinister but something called hypnagogic hallucinations. These, she feels, are occurring as a result of extreme tiredness due to my daughter having such a bad relapse and her ME being severe, on top of that her medication switch for her depression hasn't had any effect which has resulted in her sharp decline in mood.  

So - we are trying a new anti-depressant and are going back for a review in 2 weeks.  We have to watch her very very closely to ensure that she doesn't show any suicidal traits and have an open line to call should we become worried between our appointment and now.  It is hoped that the voices will dissipate between now and then, if not, further investigations will follow to explore their cause.

The hallucinations as experienced by my daughter can also be accompanied by other psychological or cognitive symptoms including:

• Anxiety, irritability or agitation
• Changes in mood, personality or behaviour
• Confusion, forgetfulness or disconnectedness
• Delusions
• Difficulty with memory, thinking, talking, comprehension, writing or reading
• Heightened arousal or awareness
• Mood depression or elevation
• Mood instability
• Poor judgement
• Sleep disturbances
• Withdrawal or depression

Our psychiatrist has discounted the following causes for my daughters hallucinations, but as I said earlier, if they continue after her new medication has had time to take hold then she may re-assess as they may be caused by psychiatric conditions including:

• Bipolar disorder (UPDATE: This has now in 2018 been positively diagnosed and she takes mood stabilising medication now)
• Psychotic depression (depression with disordered thought processes)
• Schizoid personality disorder (disorder characterised by detachment and isolation)
• Schizophrenia
• Schizotypal personality disorder (disorder characterised by a need for isolation, odd beliefs, and disordered thinking)

However, these hallucinations can also have other causes (as my daughters) including:

• Brain tumours
• Delirium
• Dementia
• Medication side effects
• Seizure disorders
• Severe fatigue  
• Sleep deprivation
• Substance abuse
• Vision or hearing loss

You can read more about this here: http://www.healthgrades.com/procedures/hallucinationshttp://www.healthgrades.com/procedures/hallucinations

Auditory hallucinations are much more than false perceptions. The combination of personalised contents and interpretational processes contributes to a dynamic and emotionally charged experience that can be better described as a belief system rooted in a perceptual experience. Auditory hallucinations are most likely to arise because of an interaction between perceptual, cognitive, and biological vulnerability as well as effective factors and contextual influences. In addition, the interpretation of these experiences combined with delusional elaboration makes auditory hallucinations a complex and truly individualised phenomenon. Understanding their complexity can lead to useful insights for therapy. - 

See more at: http://www.psychiatrictimes.com/schizophrenia/auditory-hallucinations-psychiatric-illness/page/0/3#sthash.a45XtqJW.dpuf

As a parent but yet we can understand how awful it must be for a child to feel so constantly depressed, anxious and fearful. I do keep repeating to my children though that depression isn't something to be ashamed of, it is not a weakness.  As a family we have weathered too many storms in too short a period.  This has impacted on all of us, 4 out of 5 of us are on anti-depressants, we are all going to see therapists individually and as a family.  We have been told most people only experience one or two of the traumas we have had, not so many and in short succession.  

However, not only do they have to cope with depression, all three daughters suffer from anxiety.  This makes trips out interesting and we have to plan where we go and what time we go, to be sure that it is the quietest period possible but to have a quick exit plan available should it be too much for them.

The problem we have is that the treatment for anxiety and depression (along with medications) is to work with a therapist and get "out there" and face their fears taking slow progressive steps.  This is difficult when you have ME as you have to rest, plan your day and limit your activities to manage your energy levels - picking the most important/vital activities first and then seeing if you have any energy left in the pot to do anything else, which more often than not is very little.  So we are left with only using talking therapies as the doing isn't possible, we are currently waiting for specialist therapists to become available for the girls with workers who can try to utilise the CBT approach but adapt it to suit the energy levels the girls have available.  I hasten to add that the CBT approach is NOT to treat the ME BUT to help the girls find coping strategies for their anxiety and depression.

We are aware that we have a long road ahead of us, our problems aren't going to magically go away or resolve themselves.  What I want to do instead is talk about these issues, and share with you our experiences.  A huge number of the population suffer from anxiety and/or depression and it is still quite a taboo subject for some, they feel embarrassed or ashamed for needing help and feeling this way.  It is NOTHING to be ashamed of, there are times when you simply have to step back and ask for help.  It takes great strength to do that, it is definitely not a weakness.

So, for now we shall take it one hour at a time with our fingers crossed that my daughter responds well to her new medication without too much of a wobble between the transition of coming off one drug and going onto another.  I am hoping that she is soon able to get some relief from the voices and can manage to get some refreshing sleep which she so desperately needs.  For all the girls I hope that the future will find them on top of their anxiety demons and able to feel comfortable in public spaces without shaking, sweating and feeling the urge to run away and hide.

~ Blessed Be ~

x~X~x

The Significance of May 12th

Today, May 12th, is ME/CFS/FM International Awareness Day.  

M.E. stands for Myalgic Encephalomyelitis.

ME is a serious, disabling and chronic organic (i.e. physical not mental) disorder.  ME has been classified by the World Health Organisation (ICD 10 G 93.3) as a neurological illness affecting approximately 200,000 individuals within the UK.

Of that number, approximately 25% of those affected will go on to develop severe ME which is an extremely debilitating illness, sometimes lasting for years, in some cases, even decades, often rendering the sufferer completely housebound, wheelchair & bedbound and dependent upon carers for their everyday needs.

The Chief Medical Officer’s Report on the subject of CFS/ME, issued in January 2002, recognises that it should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease

To date there is no known specific medical diagnostic test to determine or confirm a correct diagnosis nor is there any specific treatment for this condition. 

In the UK it is generally believed that at least 250,000 suffer from the disorder.

ME/CFS Some Interesting Facts

• May 12th was chosen as International ME/CFS/FM Awareness day because it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. 
• Myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS), is a neurological illness (affecting a person’s nervous system).
• Myalgic Encephalomyelitis means pain in the muscles, and inflammation in the brain and spinal cord.
• It can occur at any age and can affect children as well as adults.
• Women are about three times more likely to get ME than men.
• Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or fulltime, while reducing other activities.
• About 50 per cent will have a moderate to severe form and not be able to get to school or work. 
• Another 25 per cent will experience severe ME and be housebound or bedbound.
• Contrary to popular belief, more than one member of a family can have ME/CFS.
• Cher in 1992 had to take time out of her career she thought she had the Epstein Barr virus, but later turned out to be ME/CFS.
• ME/CFS, by different names, dates back to the 1700s.
• On average, many people with ME/CFS will have improvement in the first five years, but others may remain bedbound or highly housebound for life, or may suffer relapses throughout their lives.
• ME/CFS often begins abruptly, but sometimes the onset is gradual. In about one-third of cases, the sudden onset follows a respiratory, gastrointestinal, or other acute infection with flu-like symptoms, including mononucleosis. Other cases develop after emotional or physical traumas such as bereavement or surgery.
• There is no treatment or cure.

Our Journey with ME

ME came into our lives in 2010, affecting my youngest daughter first.  She hasn't been able to attend mainstream school since then.  My middle daughter fell foul of ME after suffering from viral meningitis and had to give up her GCSE's as she was too unwell to access her education. Our lives as a family have been irrevocably altered.  ME is a cruel illness, it cares not who it affects, how old you are or what plans you have for your future.  Prior to Tara becoming sick we knew very little about ME, it was only because we were faced with the harsh reality of the illness that we start to research into it.  We are hoping to change public perception, sufferers need to be understood and supported, there are far too many derogatory myths which need addressing and the truth about this illness needs to be shared.  I hope for a future where sufferers are believed, supported and helped by everyone and not only from within the ME community.

In a bid to address these myths Tara made a video to try to explain to others how this illness has changed her life and also to raise awareness about it and the need for support and understanding from others. She made this when she was only 12 years old (2 years after her initial diagnosis). We have been using this video ever since.

Now that Tasha has also been diagnosed the girls felt that it was time for a new updated video and so for ME Awareness month Tasha and Tara put their heads together to come up with a new one. They are hoping that the video will help raise awareness about the illness and with it hope for better understanding from none M.E. sufferers. There are no obvious signs of illness and this is why ME is sometimes called an invisible illness because of just that - you can't see it but it is there all the same.

Then, Keisha did a fundraiser and shaved off her dreadlocks to raise funds for Invest In ME Research!

I wrote our M.E. blog today as part of an awareness blog bomb; (#May12BlogBomb)  

A link to direct you to all the participating blogs is below;

http://sallyjustme.blogspot.com/2014/05/May12BlogBombLinks.html

~ Blessed Be ~

 x~X~x

Shifting Sands

Whatever happens there is always another choice.

This past week I have felt as if I have been walking on shifting sands, having to intermittently steady myself regain my balance and slowly cautiously walk forwards feeling unsure with every step.  I feel we have now reached firmer ground, the sand held more securely in place by sea grasses yet a thoughtless step could still cause us to slip and fall.

I suppose the catalyst for this has been looming deadlines regarding the girls education which has underlined in thick black sharpie exactly how unwell they all are. Funnily enough it is much easier than you would imagine to view the girls lives as not THAT abnormal, they're not THAT sick in order to keep on going day in day out.  Then deadlines arrive and you realise exactly what they CAN'T do and that in actual fact they are really not as well as you had allowed yourself to believe.

Tasha and Tara are trying to focus on positive goals which can allow them to pursue their photography/media ambitions.  College/school are not a possibility for them - they couldn't physically manage to get there and back, let alone study whilst there too.  So we have opted for Nisai Academy for them to take the two year Maths GCSE and the one year English iGCSE. The TYMES Trust advocate Nisai particularly for children with ME as the Academy are used to working with these children and understand the nature of the illness. Also the girls can "attend" their lessons in bed in their pyjamas if necessary and all the live lessons are recorded to allow for revision, brain fog issues and if they are unable to attend the live lesson due to any ME relapse then it can be watched at a later date once well enough to do so.  We shall be starting these with the girls in September.

The most important lesson from all this we are sharing with our daughters is that life throws you many different challenges and it is how you rise to these that counts. You don't have to follow the well worn route that many others take - sometimes you have to step off the path to find your own way forward.  For my girls this has proved to be so very true.  They are all incredibly bright and artistic girls - if health had been their friend then they would have followed a mundane academic route and done very well too.  However, life has chosen a different path from them and thrown them a few curve balls to set them on their way.  Tasha is hoping to find a future with her photography, Tara media and Keisha jewellery making, ceramics and possibly some other complementary therapies such as crystal healing etc.  

We have no doubt in our minds that even though the girls will not hold pieces of paper printed with qualifications their futures still hold so much promise for them.  They have ambition, drive and artistic talent which we know will carry them forward and be their route to provide for themselves when they fly the nest and strike out on their own. 

So for now - we negotiate the shifting sands that are under our feet, taking each day, week, month, year at a time.  Facing each new challenge together as a family, standing together to support each other through our sticky patches pulling each other along.

So a message for my wonderful trio, a wonderful quote which is so true

"I love you and would never leave you.  During your times of trial and suffering when you see only one set of footprints in the sand...it was then that I carried you."

~ Blessed Be ~

x~X~x

How to explain Pacing to Teen?

Pacing, I think everyone with ME will agree, is difficult even for us adults to get our head around let alone get it through to a teen.  Teenagers have that desire to "do" and become exceptionally frustrated when sick and they simply just can't.  So when they feel they have some energy they want to spend it all at once, to be able to "do" something they have longed for ~ spending time with their friends or to go out on a trip, to hell with the consequences!

That's great for when you are in that moment but then when the relapse/crash hits and they are in bed and suffering all that happiness and joy they experienced is forgotten because of the pain and discomfort of the relapse.  Life for any sufferer is unfair, but watching a young person suffer and struggle, missing out on the fun, rough and tumble, adventures and excitement of childhood is just devastating.

I have struggled to explain pacing to the girls, it's merits and long term promises.  So far we have been fabulously unsuccessful at implementing it to a point where results can be seen.  I am guilty myself of allowing them to participate in something knowing full well they will pay the price later - the worry being that they will not get the opportunity to do x with y again in the future - do you know what I mean?

THEN a very good friend shared this excellent article by Dr Sarah Myhill with me which explains everything we already know but set out so clearly that it makes perfect sense - and perhaps it will help me finally find a way to explain pacing more clearly to my girls and HOPEFULLY then (if we can put it into practice as set out by Dr Myhill, this is yet to be established) we could potentially reduce our episodes of Boom and Bust that we are currently experiencing.

For those of you who are unaware of who Dr Myhill is, she is a UK doctor who is respected for her knowledge and work with ME/CFS patients and has now become a leading specialist in this area.  She has helped many people with all aspects of the illness from diet, supplements, symptoms relief and pacing.

I am presuming that by now everyone knows that with ME any form of exercise can have a very negative impact on the sufferers health but what many may not be aware of is that emotional stresses can have equal if not more of a negative impact on health too.

Of all the ME sufferers I have met, including my daughters, they are all people who are full of drive and prior to the illness were active and ambitious people - by no means "lazy" as they are often portrayed.  The problem with this is that most ME patients are impatient to "get better" to improve their fatigue levels and so often end up in the boom/bust cycles because they push themselves beyond the limits their body can tolerate. This then also brings forth frustration and disappointment when they then have to stop and rest in order to climb back out of the relapse that the activity has created.  Thus they don't improve - their health stagnates into this cycle.  The key to progress and regaining health is to pace - to limit what energy you use and stop all activity BEFORE you have used up all your energy reserves.

What causes this delayed fatigue is a question I wanted answering at the beginning of this illness and Dr Myhill answers my question beautifully - so I shall quote her directly...

"We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled very slowly, if at all. 

[Note: Dr. Myhill’s 2009 research paper - "Chronic fatigue syndrome and mitochondrial dysfunction" - suggests that in CFS the mitochondria's normal ability to produce adenosine triphosphate (ATP) and recycle adenosine diphosphate (ADP) or adenosine monophosphate (AMP) to replenish the supply is compromised.]

Cells have to make brand new de novo ATP from D-ribose, but this only happens very slowly, 1 to 4 days. In the meantime, cells can get a small amount of ATP directly from glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle symptoms."

The problem with many ME sufferers is that first off, at the beginning of each day, you have far less energy reserves than a fit and healthy person.  Then throughout the day, just doing what healthy folk wouldn't even consider an activity - tasks such as washing your face or cleaning your teeth, deplete their energy quite significantly.  Then you have to account for going down stairs, eating, getting dressed etc - quite often by the time a person has washed, dressed and eaten breakfast they have pretty much used up most of their energy reserves for that day.  Dr Myhill puts it far more eloquently, so I will quote her again...

• "Imagine that a normal healthy person has £1,000 worth of energy to spend in a day.
• The CFSs only have £100.
• What is more, this has to be spread out throughout the day in such a way that they have £20 "change" at the end. This will then allow recovery to occur.
• Furthermore, you are only allowed to spend a few pounds in one session – then rest.
• If you start to get symptoms, then you are overdoing things. Often this means you have initially to do less – but with careful pacing you will end up doing more!

I also like all my CFS's to have a sleep in the day, even on a good day. Homo sapiens evolved in hot climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip after lunch. Young babies and older people return to this more normal sleep pattern and ill people should do the same. An afternoon sleep is normal! I do!"

She notes that most sufferers compare themselves to how they were before they were sick - this is unrealistic and will lead to not achieving your goals.  Accept what you are able to do on any given day - AND THEN DO LESS. 

That is the key to pacing - not easy though is it?  How many times have you thought that even though you are tired you'll "just get this done" so that you don't have to do it tomorrow.  That could be the task that tips you over and puts you back into relapse.

Also, I have to clarify that REST means just that ~ not to do anything at all, just to lie quietly flat on your bed ~ ALONE in your bedroom too, without any stimulation and relax.  This means no mobile phones, not TV, no computers, no reading, no music in the background, no chatting to friends or family ~ just peace and quiet and time to relax as fully as you possibly can.  Those activities I have just mentioned have to be rationed throughout the day and accounted for from your £100 you have to spend.  

Dr Myhill states that it is important to rest lying down flat on your bed as it makes pumping the blood around your body much easier and therefore is less stressful on the body.  She also adds that a little caffeine has been shown to be helpful in this job too - so a little dark chocolate is encouraged, which is a bonus.  She also states that it is VERY important that these rest periods are included into your daily programme so to build it into your routine, EVEN on the days when you feel more full of energy than usual, you must STILL take the time out and have this rest period.

The problem is - have you ever tried prising a mobile from a teenagers hand?  I swear they are welded onto them!!  AND then getting them to lie still and rest without hearing the words "but I'm bored!" "can't I just have my music on" etc.  Sounds such a simple thing to implement but not so easy in practice!

The next part though, is critical to effective pacing. To only do any activity IN SHORT BURSTS ~ I can hear the ensuing laughter from all parents with children with ME!  This is the part I struggle most with as a parent caring for two teenagers with ME, when they have the energy they want to spend it all at once and are hugely resentful of me stepping in and saying "No, you must stop now and rest."  To quote Dr Myhill again she says "You will be more efficient if you do things for 10 to 40 minutes (whatever your window of time is), then rest for the same length of time."

So, back to pacing - what are the steps...

• Reduce all physical and mental activity to reach your baseline - what  you are able to do each day without bring on a relapse/crash situation.
• Add into your day the regular rest period, follow a good diet that suits your needs (Dr Myhill advises the Stoneage Diet) - we personally follow a high protein, low sugar, low fat, gluten free (where possible) high veg & fruit diet.  Taking supplements where advised and any other medications.  Get to the point where each and every day is the same, with very low levels of activity which are not causing any detrimental effect to your health - this is your baseline.
• NOW this is the start of pacing, very slowly and gradually add in some activity to your day.  Add the same amount of activity to each day AND NO MORE making sure that it does not cause any detriment to your health.  If it does step it back again a little.  When you are able to tolerate that small increase of activity each day without and detriment then step it up just a small amount.
• Dr Myhill stresses that the key to this being effective is to VARY the activity you are doing on each day - this is in order to exercise different parts of your body and brain on each day.  She also tells us that any visual activity is far more draining for the body than any audio activity.  So when planning your activity this needs to be taken into account, for example; watching television would have to be for a shorter period than listening to music. 
• Physical activity/exercise has to be very carefully managed - initially just gentle stretches and increased only as and when no detrimental effects are experienced.  We find gentle stretches in a warm bath or pool (if able) are very helpful as the water supports the body whilst exercising the muscles.
• Very slowly and cautiously increase the physical and mental activity - always monitoring if any detriment is experienced.  Any post exertional malaise experienced will indicate you are doing too much and so step it back a notch until no PEM is experienced. 

A very useful tip is shared by Dr Myhill about managing activity, which she attributes to one of her patients, but is also something our ME Consultant asked the girls to do in relation to the people they interacted with, was to categorise activity into three groups;

• Energy Giving
• Energy Taking
• Energy Neutral

This whole process of pacing is to help you find the balance within your day and to ensure that the energy input equals the energy output.

Some people find charting helpful - I am planning on charting the girls activities into the three categories and then planning their day around it - so days where they have appointments need balancing with periods of rest.

It has to be also noted - and something which was very much underlined by our ME Consultant.  That when you become sick due to a viral or bacterial illness and have ME, this can in itself cause a relapse/crash situation.  

So, do not to be disheartened by this setback instead be aware that it will mean that you will have to plan in this situations to go right back to basics with regards to pacing - but to do this only once you have recovered from the illness - then with your pacing knowledge you have to build yourself back up again regarding activities you are able to do in a day.

We have been told that once you have mastered pacing that the crashes will become less severe and frequent because you learn to tune into your body, it's needs and limits.

The most important message is to learn to ask and accept help and to learn and acknowledge your limits. 

It's not easy I know and I am aware that we have a long journey ahead of us - especially when teenage hormones and stubbornness are involved!

Wishing you all luck on your pacing  journeys and will keep you posted on how we get on with ours.

~ Blessed Be ~

x~X~x

Progress

Last week was quite simply pants because I had to spend most of the week in bed with flu and a raging fever feeling like a wrung out dishcloth. 

Thankfully, this week the fever has left me but just so I don't feel too lonely it made sure a cold and husky throat remained to keep me company (how kind!).  At the start of this week The Dave and girls couldn't help laughing at me, as my voice kept disappearing and coming back with the odd squeak, much to my annoyance (as a control freak not having the use of my voice with which to bark out orders to the rest was mightily inconvenient and a great verbal holiday for the rest of the family). The squeak then developed into a new deeply unpleasant man voice, all be it one that sounded as if it had smoked heavily all it's life.  However,  I am pleased to say that today I have a voice - a little wobbly and husky but still a usable voice which is also no longer a chesty manly one too - thankfully.

This week has not only seen the start of a recovery from flu but also some real plans for the girls healthcare.

On Monday we went with my eldest for her review with the psychiatrist, where we discussed her urgent need one to one therapy whilst waiting for the specialist therapist to become available (long 6 month waiting list time) and so this is now being organised via CAMHS asap to hold her in the interim (although there will also be an inevitable waiting time) and thankfully the change of medication should soon start to show some effectiveness over the next few weeks, as it build up in her system.  We had some very interesting discussions and the upshot was that we feel that we will also benefit from revisiting family therapy -  not the usual format (as we had in the past) but with our lovely liaison worker (guided by the psych), to make the atmosphere less intimidating no two way screen or listening support workers either and to use modelling clay, paints etc during the sessions to keep it informal and light whilst talking about the more difficult issues.  Starting it all in a fortnight - so hopefully that we will all benefit positively from this.

On Wednesday morning we had a massive team meeting to review and plan future care for both the youngest with regards to their mental health and ME issues.  It was led and chaired by our CAMHS liaison worker and supported by our pscyh and other therapist from CAMHS. Also involved were the Medical school team, and private Paediatric Consultant on speaker phone - with minutes being sent to the OT (who we had yet to meet) and our NHS Paediatric Consultant for middle daughter (who weren't able to make it due to work commitments).

Anyway - this meeting was the BEST we have had EVER - and that's something as we have been through years of meetings, reviews and assessments and never experienced anything as supportive and positive as this.

At the beginning The Dave read out the letters from the girls stating what they felt they needed and how they were both physically and mentally right now.  I hasten to add both girls were invited but were not well enough to attend on the day.

We then approached each daughters care plan individually, discussing each health care providers  vision of care - where we were now and how it could be made more holistic with cooperation from all the other elements involved.  Medical school stated they had an obligation to teach our middle daughter but had barely seen her due to ill health - so the psych said she would formally write a letter stating she was not fit for education of any kind and that would resolve that issue.  Our plan for the middle daughter was to work with the specialist OT to help her regain some strength and physical fitness and utilise her passion for art and photography as activities to use when pacing (instead of school work) and in conjunction with CAMHS support to build her up very slowly and gently.  Her therapist agrees that CBT would help with her anxiety issues and so the psych is pushing that referral through and in the meantime is going to spend more time with her to review her medications (which her Consultant feels may also need increasing) and get her current therapist to work alongside family therapy and the psych appt's until she is handed gently over in a slow transition to CBT as she gains some strength.  Our lovely private Consultant will also now slowly handover to our NHS Consultant who now has taken our daughter on (instead of his registrars who kept changing every appointment) - so that we will be working with a small team and always seeing the same people for improved continuity and communication.

For our youngest daughter it was mentioned that she was under a different Consultant and only saw his registrars, who again were always changing creating lack of continuity and progress. So our psych will be in touch with the hospital on our behalf and switch her across to see the same Consultant as her sister (and NOT his registrars) - as sibling usually go under the same doctor and will help minimise the different people involved and improve quality of care.  She is also being referred to the same specialist OT as her sister for rehabilitation care and her CBT referral being chased up (as we are in the position of having been accepted but not allocated a therapist yet).  Her schooling was also discussed and agreed to slowly increase her time at home with the home tutor, then move her to the hospital school room, still with one to one with her tutor from home and then build up her time and stamina there until she can tolerate 8 hours of schooling a week - when we reach that point it will then be a case of transitioning into mainstream school for her 4 hours of English and 4 hours of Maths lessons a week alongside her peer group and spend a few of the break times there too for socialisation.  This is obviously going to be a slow journey and will take months to progress - but we are being supported with this by the doctors, therapists and OT and so hopefully we can monitor her ME and try and prevent pushing too hard too fast and any major relapses (which have happened in the past and been so severe all schooling had to be halted).

The next meeting has been made for June with all the same parties being invited, also the NHS Consultant and OT hopefully being able to join us for that one too.

Then - on the same Wednesday but in the afternoon we met the OT (with middle daughter) who just was so kind, understanding, supportive and "got it" - such a massive relief.  She also said she would look out for youngest daughters referral and would definitely take her on and it should only be a matter of weeks before she would be able to see her too - so not too long to wait.  So middle daughter has a few charts to fill in (with my help) to get baseline abilities and has also agreed to go to the OT group once a week for an hour from 11am to midday on Tuesdays to do crafty activities with other girls aged between 14 & 19 years old - so a great age mix too.  Her pacing activity for this week is just to get up and dressed every day - nothing more, just that.  We have committed to attending the group and were told if she is feeling really sick just to take her in in her wheelchair and they would care for her - she wouldn't have to do any crafting but to be with them so they can see and assess her and then have the knowledge to then address her issues when on bad days.

Today though - is our biggest success (as she had been suffering days with constipation just when we needed a small poop!) - we managed to get a stool sample for middle daughter too - so we can send it off for testing to see if she has Crohns or Ulcerative Colitis.  Now we have to wait for 2-3 weeks to get the results as it gets sent away for testing.

ALSO - today my eldest daughter had a fabulous idea - she had bought a blank canvas and some children's water based paints and wanted to make a piece of dog art!  So, as it was a lovely day outside today and eldest had the afternoon off College and we have no appointments to attend to - we went for it.  The youngest two were very tired and aching but managed to gather up some energy to participate (the warmth of the sun did help a little) and they proceeded to fill paper plates with paint, the dogs were then fed treats in return for having paws put in the paint and asked to walk on the canvas, it was great but messy fun!  At the end we all put our hand prints in each corner and finger painted our names onto the canvas too.  Then it was time for dog baths and for me to hose down the patio and decking!  Once the canvas is dry we will seal it and then it will be ready to hang.

Needless to say the youngest two are now pooped and fast asleep - most likely they will also get PEM over the next day or so - but we have an album full of photos and a colourful canvas to remind us of the fun we had.

For the first time in a very long time, this week I feel that we have hope.

I am incredibly grateful to the team at CAMHS for streamlining our medical care team on our behalf and contacting all the necessary parties to ensure that the channels of communication are kept open and that everyone is informed and kept up to date with all treatments and care plans that are being made.

It has taken us literally years to get this far, we have been through a number of different departments and medical teams at the hospital in order to find the practitioners who are the perfect fit for our girls and we certainly couldn't have done it without the help from CAMHS and in particular our family liaison worker there who has been phenomenal.

So whatever your circumstances are right now, however hard life is - please don't ever give up hope.

~ Blessed Be ~

x~X~x